Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be."

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

2002 - June 29, Weight Control

Kennedy's Disease Chat Transcript 06-29-02

Topics: Weight Control

Host: Patrick Griffin

Chat Participants:

terryw
bruce
johnm
susannew
edm
rudy
don48312

butch

chuck

patrick

lenj

daveg

BEGIN CHAT

edm -- hello terry
terryw -- hey, Hi Ed
terryw -- how have you been?
terryw -- still running?
edm -- very well, stil feeling good and still able to run. How are you
doing
terryw -- doing OK here, Legs gave out a few times last week and I fell
but it was on grass so I was OK.
rudy -- {welcome rudy}
rudy -- good morning to all of you
terryw -- Hello Rudy
edm -- good morning
rudy -- hi terry
terryw -- Welcome Rudy,, glad you could make it.
terryw -- Ed, Rudy is new to the KDA
rudy -- yes , over here it is all rewady 16.15
terryw -- Netherlands right rudy?
rudy -- yes from the netherlands
don48312 -- {welcome don48312}
butch -- {welcome butch}
edm -- Well, this is my first time on the chat - one on exercise - I could not resist!
terryw -- Hi Guys
terryw -- Don, how are you feeling?
don48312 -- RECOUPERATIOIN IS PROGRESSING NICELY, BUT SLOWLY
don48312 -- GOOD MORNING ALL
chuck -- {welcome chuck}
terryw -- Patrick will be hosting this chat session and should be here
momentarily.
butch -- Good day to all on board so far this morning. Had trouble with my
modem and could not get on line. I think everything is ok now.
rudy -- terry how old are the most of the people with kda
terryw -- Rudy, it varies but most are in 40's - 60's
rudy -- so the most people have the same age, but can you tell me anything
about the progress of the KD
patrick -- Rudy, progression varies from person to person.
terryw -- Rudy,, that vairies from individual to individual but most have
slow progression.
patrick -- At one point, researchers were trying to link progression to
the number of CAG repeats one has, but that hasn't been shown to be an
accurate predictor.
don48312 -- the survey should show if there is a correlation between cga
repeats, and progression rates
patrick -- Also, it was thought that the further up the family tree one
was (older relatives had the disease), the more one progressed and the
earlier one starts to have symptoms. That, too, was not accurate.
patrick -- As with most neurological disorders, one's environment may
affect progression. Diet, exposure to toxins, earlier diseases, etc.
patrick -- {welcome patrick}
terryw -- Hello Chuck
terryw -- Hi Patrick
butch -- I sure missed the las couple of chats. I'm glad we can go on line
to get the transcripts of previous chats.
terryw -- Butch, you get the ones we send out also right?
butch -- Terry: Yes I do. Thanks again for the job you do for all of us.
patrick -- Hello, all. Hope everyone is feeling fine today!
rudy -- do you have KD terry
terryw -- Yes Rudy,, I am 40 was diagnosed about 6 years ago
terryw -- my progression seems to go in spurts,, sometimes level for a
year or so then progression then it flattens out again
edm -- Rudy, I take it that you just were diagnosed? How severe are your
symptoms/signs?
rudy -- edm last october i was diagnosed the first time and now i have
trouble with walking and walking on the stairs, and iam not allowed
anymore to work like a bus driver
susannew -- {welcome susannew}
terryw -- Hi Susanne, You new to the KDA? LOL
lenj -- {welcome lenj}
susannew -- Good morning! This is great, now that we have 2 computers I
can log in at the same time as Terry (my employer set me up for my home
office!)
edm -- good morning, susanne
terryw -- Hello Len
lenj -- Hello everyone from Len in sunny Vegas
terryw -- HOT Len?
don48312 -- hi susanne
terryw -- Patrick, Do you want to start yet? or should we wait a few min more?
patrick -- Terry, let's go to today's topic, exercise. We'd like to
discuss what has been recomended by care providers; of that, what really
works; and what any of us may have found helpful through trial and error..
lenj -- Don--how are you feeling?
terryw -- I am glad Don is back with us,, we missed him in here.
don48312 -- feeling better len, will take 3 months to fully recouperate.
getting there slowly though
susannew -- Don: How are you doing?
susannew -- Oops too slow on the send button!
don48312 -- super susanne
susannew -- How did the move go Len?
susannew -- Sorry, I was catching up with the previous chat lines..
susannew -- Most of the questionnaire's have been spread into an Excel
spread sheet by volunteers. I extend a huge thank you to them for their
help. We have a few more to go and then we can begin putting them all into
one spread sheet where we can look for correlations. I am thinking of
running an ad for some local volunteers to help me with that project. I
feel I am not moving fast enough on it! Too many priorities and constantly
juggling them!
susannew -- We received about 45 questionnaires back.
terryw -- Bruce had sent me an exercise program that his brother that has
KD uses. I will be posting it to the website under exercise this week for
all who are interested. But it is always good to check with your doctor
before beginning any exercise program.
patrick -- The most general recommendation about exercise by those with KD
is to take it easy, do not over-do, do not injure oneself, and in general,
to attain a sense of well being. Any comments?
susannew -- Its very interesting how some with KD can continue to build
muscle, while others it seems to be a detriment.
butch -- Patrick--I am lucky enough to have an above ground pool which is
4ft 6in deep. This is perfect for running in the pool. This gives you the
exercise and doesn't put stress on your legs or feet like running on the
ground. Also it is alot easier if you fall.LOL just lay back and float.
susannew -- Terry tried exercising in a pool...
susannew -- I agree its much better if you lose your balance in the pool.
I just worry about legs collapsing (Terry's have done this where he cannot
move them). If noone else is around, I'm concerned about him going under
water and not being able to get back up.
don48312 -- I also, use a wading pool to walk. the pool is easy on my
joints and i was walking 1 1/2 hours without a break, without tiring
terryw -- I went to the beach this last week and I could not get back out
of the water or stand up. It was scary. My brother in law had to drag me
ashore and help me stand up so I could get out.
susannew -- Something to seriously consider when exercising (or just plain
walking) is if you fall, you can break a bone. We have heard of a few
individuals who have KD, who severely broke a bone. A fatty embolism
developed and moved the lung. They each passed away. I hate to bring this
up, but I want you to be aware of this possibility.
butch -- Susanne--This is always a concern but if we don't try different
things we go no where. I have steps into the pool as well as a ladder. So
if i get into trouble I can rest at the steps.
don48312 -- that is why i walk in a pool susanne
patrick -- Susanne, about collapsing. I've been getting a lot of upper
body exercise lately, while walking. I walk, then fall, then pull myself
upright, then repeat. It may not be classic, but I'm tired when I'm finished! ;-)
susannew -- Butch: Good to know... can you tell I can be a worry wart!
susannew -- Ed: Can you tell us a bit about your experience. I know you
have KD and are running races.
edm -- To begin with, I was diagnosed very early in the progression.
susannew -- Ed: Do you think you are building muscle running?
edm -- susanne,, Yes, I am much stronger and faster than ever in my life.
susannew -- Have your doctors documented anything like that?
edm -- If my cousin had not been diagnosed, I would not have ever gone to
a doctor with the mild symptoms I ccurrently have.
patrick -- Butch, your experience seems to be ideal.
edm -- I started running seriously when I was first diagnosed.
edm -- Since then (1999), I have run sevceral marathons, and many other
races and lsot about 40 lbs.
patrick -- Ed, what distance do you run, for practice and for competition?
Is it more aerobic (e.g. long distance), or anearobic (e.g. sprinting, hill work)?
edm -- Patrick, long distance - I ahve never been fast ;-)
rudy -- ed how do you bild your muscle's and can you walk far,and long distance
edm -- Rudy, I can walk far!
rudy -- s , and i can't walk on the street anymore
edm -- My neurologist has noticed no degeneration in my limbs and beleives
that there has been reinervation of my muscle fibers. Exercise stimulates
reinervartion (and thus shsould save the muscle).

rudy -- ed what is your age
edm -- Rudy, 48
johnm -- {welcome johnm}
susannew -- We were told by Terry's neurologist the more he exercised, the
more he would lose muscle mass, but I think less use, the more wasting...
its a catch 22. I believe moderate exercise is the order of the day.
rudy -- ed i play in a music band and play on a bastuba but it give's all
ready problem
rudy -- is there some body who play on a music instrument like i do , i
play on a bastuba
terryw -- Rudy most people with KD cannot blow up a baloon even.
rudy -- so iam a lucky guy i believe
butch -- Hey Rudy--You are truly lucky to be able to play the tuba. I
can't even whistle any more.
terryw -- I can still whistle
susannew -- ...while you sleep
susannew -- When Terry sleeps he makes odd sounds... like groans and gasps
for air... does anyone else do this?
edm -- I snore (s I have been told) if I am on my back.
butch -- Susanne--What are you trying to tell us. Terry whistles in his
sleep. I guess he is dreaming of you.
susannew -- butch: : ) I can only hope!
lenj -- Susanne get him a bipap machine and let it help him breathe.
susannew -- Len: We have been talking about the bipap lately...
terryw -- Len,, I am thinking about that. Especially for the next time I
get sick so I will have it handy
susannew -- Terry's respiratory system seems to be weakening lately - his
latest progression...
susannew -- Len: Did you make noises in your sleep prior to the bipap that
Jeanne told you about?
lenj -- I made so many noises that I used to wake myself up
terryw -- I do that sometimes len
patrick -- Susanne, that sounds like sleep apnea. A number of things
contribute to it, so Terry my need to see a specialist about sleep
disorders or a respiratory therapist.
lenj -- Terry should have a sleep study done
susannew -- Good to know. It used to be so odd to hear it, now I guess
I've learned how to ignore. Although sometimes I can't sleep because of it.
susannew -- What do they do in a sleep study?
lenj -- You sleep attached to many electrodes that monitor different
functions, such as oxygen levels, pressure in and out, eye movements and others
terryw -- I dont know if I would be able to go to sleep under observation.
lenj -- Terry, believe me, you will sleep, most likely sporadically and
that's what they are tracking
edm -- I have found changes in the facial area as well as swallowing and speaking.
susannew -- Changes in facial hair?
susannew -- Edm; I'm sorry - a good laugh for everyone... I just woke up
and I misread!
patrick -- Ed, you've brought up a good point. When a neuron dies,
initially other healthy neurons generate axons to the orphanned muscle
fibers. That happens in KD, and in other injuries and diseases.
edm -- no, facial weakening, twirtches etc.
susannew -- Speaking and swallowing are affected by KD - that is the
Bulbar part of the brain is affected with KD
patrick -- If one has a slowly progressive KD, then it would seem that
this regeneration may keep up with neuronal apoptosis.
edm -- Patrick, I beleive that the losss of th motor nerve cell leads to
the muscle death - unless reinervation occurs. When I was first diagnosed,
I contacted a friend who was a "famous" exercise scientist -he thought
exercise would be beneficial.
johnm -- I guess you hear what you want to hear about exercise. I heard
that you should stay away from it and I do.
edm -- John, it may also be related to the severity of one's symptoms.
butch -- I think exercise is a very individual thing. One guy can do alot
of strenuous exercise without wasting muscle. Others do jus a little and
get bad results.
patrick -- At the cellular level, exercise injures muscle cells, which
causes them to grow bigger (given adequate fluids and nutrition).
susannew -- Terry doesn't exercise really. I think we should at least try
to take short walks around the block together.
terryw -- If Susanne ever gets the time we will take those walks
susannew -- Terry: HA HA! Don't tell all my secrets!
terryw -- I cut way back on Soda's to control my weight. It helps me a lot
to control my weight.
terryw -- My weight fluctuates between 170lbs to 160lbs which I am
currently at.
don48312 -- speaking of sodas, my MDA neurologist wanst me to avoid diet
sodas with Aspertime in it
terryw -- Yep
edm -- Don, I have livedd on diet coke;-)
susannew -- I've heard of the Aspartame warnings. I believe Paula G.
actually sent me an email quite a while ago about this.
don48312 -- article in wall street journal stated people with neurological
diseasaes should avoid Aspertime
susannew -- We should try to find that article and put a link to it from
the Web site... what is a recent article?
patrick -- I'd heard about Aspartime, too. I drink Diet Pepsi, usually
caffeine-free. I also go for periods without diet soda. I cannot tell any difference.
don48312 -- doc stated 'sweet and low' and 'splenda' are ok for diet sugar
substitute. the only diet soda without aspertime is 'diet rite'.
bruce -- {welcome bruce}
bruce -- Good Morning. Sorry to join in so late this morning, I have been
busy and time just slipped away.
susannew -- Hi Bruce. Thanks for joining! Better late than never.
susannew -- I didn't see Chuck and Anna Lea log in - hello there!
chuck -- Hi Susanne, I have been running around here in the house and
Charlie is doing the chat - I will read later. Charlie says eveyone we
have spoken with claims excerise in moderation - never overdo. In fact the
hospital was trying to get him to build muscle and when the therapist
arrived kept him on same excercise but doing less repeats.
bruce -- Breathing is very important to all of us. The lungs are muscles
also. I believe it is important to practice breathing correctly. I set
aside time every day to just breath correctly and it has really helped me.
susannew -- I think your heart needs something to keep it in shape.
terryw -- I exercise my Lungs by yelling for Susanne to stop working. LOL
susannew -- Bruce: Tell us what you do with Qi Gong...
bruce -- Well, I practice Qigong for 3+ hours every day. I use motion and
still Qigong (meditation0. I love it and it has been extremely beneficial
in my life.
patrick -- Bruce, you remind me of my martial arts (and yoga) teachers.
bruce -- What I like about Qigong and Yoga is that I can focus my mind and
body on my spinal column and nerves. It is extremely helpful is releasing
the muscles that are knotted up in my back, arms, legs and neck.
susannew -- I went online to a Qi Gong web site to see what kind of
exercises there were. I did a couple. I was truly amazed at how much it
seemed to open up my lungs... I really felt like I could breath better.
They were simple, easy exercises really.
terryw -- Bruce can you post that web site address?
bruce -- Wisdom Qigong: www.geocities.com/bgaughr
patrick -- When I was much younger, I worked 9 hours a day, six days a
week, went to college full time, and studied in between. I got little
sleep, but I meditated concientiously, never felt tired, and got great
grades. I'd like to find a teacher to help me transcend KD.
susannew -- God helps me transcend KD.
susannew -- Its hope, faith and prayer that keeps me positive.
susannew -- Oh yes, and knowing that there are researchers out there
dedicated to finding a cure or treatment!
bruce -- My brother, on the other hand, lifts light weights and does
regular exercises every other day for 30 minutes or so. He is an old fart
(sorry Kerm) - 67 years old.... Kerm has done extremely well with his
exercise program and it has helped him a lot.
chuck -- You know I don't feel 67 is old Bruce. I will be 75 in Oct. and
my brother also has KD and is 82.
bruce -- Chuck: I was just giving my brother a hard time (he reads this
chat notes).
bruce -- ChcuK; I think you should be telling us the secrets of your long life...
patrick -- Body builders take steroidal supplements to increase their
hormone levels so that the muscle growth process is enhanced.
bruce -- well, Patrick, if I works I do it. If it doesn't work - I forget
about it quickly.
susannew -- Chuck: Didn't you take steroid injections for a while? Can you
tell us about that experience...
susannew -- What about Chucks steroid injections... were they beneficial?
chuck -- Charlie was on testosterone for quite a few years. I gave him
injections and now that muscle has deterioated more he has gone to
patches. John Hopkins is now questioning and we expect more info on this
from NIH - we hope.
susannew -- Thank you Anna Lea. Good to know. When you find out more from
the NIH, please share with us - can post on the KDA Web site forum under
the exercise area. This way anyone who wants to see that information can.
don48312 -- anna lea, i am still on the testosterone injections, once a
week. i feel they help.
chuck -- Don, they have left if hanging at present. How do we know if
Charlie would have been worse without them????
susannew -- SOme with KD who have taken steroid injections saw some
benefit from it, others did not... answer still lies out there...
lenj -- Patrick, my doctor gave me a large amount of steroids in a short
period of time and it totally weakened me
don48312 -- i wuz in the study at Ohio State, and i could tell the
difference with/without testosterone
terryw -- Bruce=Yoda
terryw -- teach us oh master
susannew -- Thanks Chuck for being online!
terryw -- Rudy,, You still with us?
susannew -- Rudy: What do you do for exercise?
don48312 -- are you all aware of the article about Kennedy Disease in
'Quest'magazine this month?
susannew -- Yes we saw the article regarding Kennedy's Disease. It was a
very good article. If you haven't seen it, go to the MDA Web site and look
it up. There are advancements being made in research...
lenj -- Don, the article left out one important thing--the information on
the KDA
susannew -- Len, the MDA's article was from their organization. Just as I
cannot speak on the MDA's behalf when I talk about the KDA (Kennedy's
Disease Association) with publications, I don't believe they can speak on
our behalf. The KDA does help offer support, connections to others with
KD, and some additional detailed information. The MDA offers medical
clinis, durable medical equipment, and other support. Both of these
organizations have in mind research. Although the KDA is specifically
focused on Kennedy's Disease while the MDA has many they are helping
support.
susannew -- So I understand why the KDA was not mentioned in their article.
susannew -- Len: I know you gave them our phone number... we did not hear
from them. But again, I can understand why!
bruce -- The article in Quest was the most positive article I have seen on
KD in sometime. This could be good for our children.
susannew -- I think the article in Quest magazine was very positive and I
see research helping in our lifetimes...
don48312 -- i agree susanne
patrick -- Meditation, exercise, stretching, breathing - these are all
tools provided to us by our Maker so that we may move from now to peace
and health.
butch -- {goodbye butch}
butch -- {welcome butch}
bruce -- All I know was that when I was lifting weights and using the tred
mill, I didn't have the brains to listen to my body. I pushed too hard
with the assumption that a little will do some good and a lot of exercise
will do a whole lot more of good. I was wrong. that was when I found
Qigong.
chuck -- Before KD I was a very active man, however this certainly all but
stops you. NIH just took pictures of my body for a future text book for
med. students - my body should certainly open those students eyes and
cause a few laughs.....
patrick -- Chuck, how did you pose?
chuck -- Standing with help of a cane and shorts on which I don't wear
anymore in public.....They did take so many poses, including hands,
tongue, inside mouth etc.
susannew -- Chuck: LOL - Although I think it is great that you posed
(glamor shots) for medical texts. I've heard from many via emails to us
that their doctors have told them they won't live to a ripe old age. You
and your brother are proof it does happen. I think modern technology will
help KD'rs live longer lives.
chuck -- Yes Susanne, that is a bid "LOL". You know Drs. have told us that
KD will not kill you, however, choking and some other connected things may.
patrick -- Interesting, Chuck. I'm amazed that KD is making it into a
text. When I was diagnosed but a few years ago (in 1995), I could find no
mention of KD in texts. I had to go to research papers.
lenj -- They wanted glamour shots of me, but the writer forgot his wide
angle lens
susannew -- Len: You are sooooo funny!
edm -- Patrick, the neurologist that I see has filmed me and has used me
as a teaching aid for residents.
susannew -- Ed: That's wonderful news. I encourage everyone to go out and
help educate doctors, neurologists and doctors/neurologists-to-be. Terry
goes to UCLA and allows them bring the residents in to study him. I think
we all need to do our part to help them understand and recognize KD when
they see it to help stop misdiagnosis.
edm -- The doctor also uses my case as a diagnositc test as I do not have
major changes. I am kind of a trick question! But it should help the new
neurologists.
chuck -- Patrick, I believe this is a book generally on nuromuscular
diseases and due to Dr. Fishbeck's research he and Sr. Sumner is doing one
chapter on KD. ISN'T THAT GREAT???? Charlie was so happy just to help
since they believe pictures are sometimes worth a 1000 words....
susannew -- Thankfully, Dr. Fischbeck has been very involved in KD
research and continues to be.
chuck -- We too feel you younger ones will see help in your lifetime even
tho they won't be able to bring back what is gone or at least I don't
believe they will.
susannew -- Dr. Fischbeck and Dr. Merry shared with us in June 2001 at the
KD Meeting in Chicago (piggybacked with the Families of SMA conference)
that they were going to begin doing FDA approved drug compound screening.
The Quest article confirmed this fact and shared other research insights.
bruce -- Well, I believe that getting the spread in Quest that KD did is a
very positive sign that it is being recognized more an more as a disease.
daveg -- {welcome daveg}
terryw -- Hi David,, thanks for joinig us from the land down under
daveg -- Having trouble with my computer (again) sorry to be so late
terryw -- The KDA gets about 2-3 new individuals a week. We now have over
500 in our database. I guess the word is getting out on KD.
susannew -- The average used to be 1 individual a week. Lately we've been
seeing 2 a week finding the Web site. Either our search engines are doing
a better job now with the web site listing or more individuals are being
diagnosed now (especially now that the DNA blood test is available). - or
more people with KD are just out there searching for information...
patrick -- I make my biannual trek to Kansas City to see my neurologist on
Monday. While usually he just wants to keep track of my progress, usually
there's from 3 to 5 residents present to poke, prod, and stare at me. A
few tatooes and we could be an act in a side-show. :-)
lenj -- Yes Patrick--the best part is having a new doctor check your
reflexes and trying not to laugh when he does it 4 or 5 times
chuck -- Patrick, let me know about the side show - we may make a few
bucks!!!!! At least they may pay for us to dress!!!
patrick -- Roger on the reflexes. Before I was diagnosed, doctors would
take it a s a personal affront it they coulnd't ellicit a reflex. I must
have worn out my share of those little chrome and red rubber hammers.
butch -- i read in the book GENOME that NIH received 23 BILLION dollars
amongst the research being done there. Since we can't exercise our bodies,
maybe we can exercise our minds to get a larger share of these moniesw for
research of KD.
susannew -- What do you propose Butch?
butch -- I'm putting it up for grabs. There has to be a way to get more of
a share for Dr Fishbeck and others doing the KD research.
don48312 -- the MDA doc here in Sarasota, FL now has 4 KD patients.
susannew -- Don, have you shared with your doctor that the KDA exists to
help those with KD? If everyone who's part of the KDA would give their
doctors our web site address, that would be so much help for those who
have KD but don't know about us.
don48312 -- susanne, yup, doc is aware of KD site
susannew -- I cannot ask Doctors to give me their KD patients names, but
if we tell the doctors about the KDA, they can pass the word on to their
patients and if they want to contact the KDA, they can. At least they
would know we are out there.
lenj -- I went to a new doctor last week here in Vegas and he knew
nmothing about KD, so I gave him a copy of the article--I even autographed
it for him
susannew -- The Quest magazine article should be on the MDA web site.
However, it might not be posted yet. I did not see it about 2 weeks ago,
we went online to look for it. We are on the MDA's mailing list and
received it in the mail.
terryw -- Thanks to the MDA for this chat tool. I spoke with them just the
other day and even if the chats help only one KD individual its all worth
it. But I am sure from the e-mails that we receive from people that read
the transcripts that it is helping far more around the world.
don48312 -- bye the way Susanne and Terry, thanks again for all your
efforts on our behalf.
daveg -- Can you tell us where you get Quest from or if it is available
on-line?
terryw -- Quest Magazine -
http://www.mdausa.org/publications/Quest/index.html
daveg -- Thanks Terry
chuck -- I just checked in Quest and this is a statement from their book.
"Quest is free to those with any of the neuromuscular diseases in MDA's
program. Subscriptions are $14. per year for others. $24. per year outside
the US." It is published 6X/year. e-mail address: www.mdausa.org.
don48312 -- i was also impressed an Italian dr used stem cell replacement
to cure the "Bubble Boys"
susannew -- The KDA web site address is: www.kennedysdisease.org
chuck -- We understand there are a couple drugs being tested now and they
are already FDA approved. This is good because if they should find they
help at least we won't have to wait years for FDA approval.
susannew -- Chuck: We have heard that in lab studies, they have found mice
who have been able to regain some strength in neuromuscular diseases...
susannew -- I've also heard it explained that when a neuron dies, the
others next to it will help pick up the slack. With stem cell research,
there may lie the possibility of regeneration also...
terryw -- We will post any information that we get on upcoming clinical
trials on the KDA web site.
chuck -- That is fabulous and that would certainly be of great help....
susannew -- Yes, that is why they are testing FDA approved drug compounds
first. If any are found to be beneficial, they may be able to skip over
animal studies and go directly to human clinical trials. This speeds the
process dramatically.
patrick -- Many hospitals and/or health systems have in-house journals. If
we all sent them a couple of lines about the KDA, the knowledge base would
really grow.
susannew -- We've had many physical therapists who have KD patients find
the KDA web site and ask us about KD. They educate themselves about KD
through the site also...
terryw -- As Marth Stewart would say "Its a good thing" or "SELL"
don48312 -- rotfl terry
terryw -- LOL
susannew -- Patrick: Lets talk about that. Recently the KDA Board of
Directors has been discussing the potential benefits of running an
advertisement in Neurology publications with medical professionals as
their audience to get the word out about KD. I have friends in advertising
and I am going to look into getting an ad developed for free. But before
that I am researching the cost of an ad with the publications... it can be
quite hefty, but if we keep it to a black and white 1/4 page ad, shouldn't
be too expensive...
susannew -- Another thing I'd like to do is ask Dr. Merry, Fischbeck and
La Spada if they'd help us develop an article about KD and submit it to
neurology magazines... Haven't approached them on this project yet... just
an idea right now.

patrick -- We have just a few minutes left of our allotted time. Normally,
the chat stays open until :45 after the hour, but but you comments now if
yo have them.

don48312 -- i'm heading to our pool for a walk. nice chat. preparing to go
to Baltimore to see all you KD'ers. bye for now
terryw -- take care Don
johnm -- Don, see you in the lab.

susannew -- We have been busy working on this years conference in
Baltimore in October. We have all speakers lined up, but one slot left to
fill- estate planning for those with KD... Does anyone know of an Estate
Planner in the Baltimore area who would be willing to join us to speak on
this topic (voluntarily)?

don48312 -- {goodbye don48312}
lenj -- Goodbye everyone--See you all in Baltimore

patrick -- CRAB CAKES!
susannew -- Yes, Sunday night, crab cakes at Gunnings Restarant!
susannew -- Gunnings is the restaurant we are going to Sunday night,
October 13h I think it is, opening up the first KDA conference in
Baltimore...
susannew -- We have about 25 ndividuals with KD (+ wives) that have stated
they are coming. Half of our hotel rooms are already booked, so if you
haven't made your reservations yet, please do so! Also, get your
registrations in before August 15th! After that date the cost goes up to
$150.00 per person. $125.00 before August 15th.
susannew -- I should say +wives, significant others, family
daveg -- I'm green with envy - would love to go to Baltimore!

butch -- Good bye Don. Stay afloat. Enjoy the pool.
terryw -- Bye Len
lenj -- {goodbye lenj}
chuck -- Looking forward to those in Baltimore and Happy July 4th to all.
Bye for now.
terryw -- See ya in Balt
chuck -- {goodbye chuck}

bruce -- Enjoyed the chat today. Thanks Patrick. Have a great day and an
even better week!

terryw -- John,, this is goona be a long chat to sort out.
johnm -- Terry, you are right. We had a good attendence and better
participation.

bruce -- {goodbye bruce}

patrick -- Happy Independence Day to all you Americans and 4th of July to
everyone else. God bless, too.
terryw -- Wish you could join us Dave.
susannew -- Would love to have you Dave.

edm -- so long everyone!
terryw -- Thanks again to John for soring out these chat transcrpts to
make them easier to read for us
terryw -- Sorting
johnm -- Thanks Terry.

edm -- {goodbye edm}
susannew -- Thank you to everyone who came today. We can learn a lot from
each other. Collectively, we all know so much about this disease!
terryw -- See you all next chat
johnm -- Bye all.
johnm -- {goodbye johnm}
terryw -- {goodbye terryw}
butch -- John--miss your wit and humor. See you in Baltimore. I really
can't wait to meet the people I have been chatting with these last couple
of months (years). Have a safe and happy 4th of July. So long till next
chat.
daveg -- Goodnight all and thanks
butch -- {goodbye butch}
susannew -- The next chat is in 2 weeks. See you all then. Happy
Independence Day!
susannew -- {goodbye susannew}
daveg -- {goodbye daveg}
patrick -- {goodbye patrick}

End Chat